Friday, December 31, 2010

Where has the time gone??? I had to take Zach to Kinko's today, when we took a little break from the hospital and the guy said to pick it up tomorrow the 31st...I was like WHAT???? It's New Year's Eve tomorrow...you got to be kidding! It is crazy how the time just seems to be traveling by. But since I found out it is almost the new year...I thought well maybe that's a good thing for us...maybe we can hope for a better year and exciting new changes. (I'm not going to count on it since each new year has brought with it it's own set of challenges for the last three but hey three strikes your out...RIGHT???? At least that's what I'm hoping for.)

Well, SO much has been going on up here it has been too crazy to try and keep it all up to date...sorry to all of you! There doesn't seem to be a moment where there is not at least someone in our room doing something with Dakota or talking to us about one thing or another. Some days it is a little overwhelming and it seems as though we have no time alone but they are all so amazing here and we have been very pleased with the wonderful people that are working with Dakota.

Christmas came and Santa found Dakota even in the hospital.

Dakota opening his stocking.

Doug and Vicki of course brought us plenty of Christmas goodies as well.

The cutest thing was a couple days before Christmas this cute boy that had been here for a brain injury brought Dakota a present because he felt bad for the kids that had to stay there on Christmas day because he was getting to go home. His cute mom peeked in our room to see what Dakota liked and they got him a Toy Story alien guy. It was so cute and sweet of them and brought with it the special Christmas spirit!

Giving Dakota his present all wrapped and everything.

Christmas day was a really hard day for Zach and I. It wasn't even because it was Christmas it was just one of those hard days where no matter how hard I tried the tears would not stop coming. We just miss our sweet little boy and hearing his cute voice. It is hard to stop thinking about what he was like and focusing on where we are at right now. That night Doug gave me a priesthood blessing and it helped so much. Sometimes you just need that added strength from your Heavenly Father to keep you going.

Overall, we are still doing well and just continuing to take it one day at a time. We are so grateful to have Dakota with us and grateful for this opportunity to slow down our busy lives and just love him to pieces. Things like this really put life into perspective and make you realize what is most important. My love and appreciation for Zach and Dakota, both of our families, and all of our friends has increased dramatically! Zach has been amazing through this all and I feel so blessed to have him by my side through all of this. I couldn't imagine doing this without him. I feel so blessed to have been given the gift of being Dakota's mom and although he is not the same little Dakota that he was right now, I feel even more blessed that he chose to stay here with us and let me be his mom for even longer here on this earth. Our children are truly a GIFT from God and we need to cherish them and treat them as He would want us to.

It is really easy when things get tough to compare your life to others and think...man, this is not fair. Why do we have to suffer through these trials while other people seem to have it so easy. This can bring you down and is very depressing. If you really look around you, especially here in the hospital, you will realize your life isn't that bad. We have been given SO many blessings and it is our choice whether we want to look at our blessings and find happiness, or dwell on our problems and be depressed. The choice is ours.

Moving on to what is happening...

So, we found out a couple days ago that we will be going home sometime early next week because he is not quite ready for their inpatient rehab program. When I first heard the news I was pretty upset and had a hard time hearing it but the more I have talked with the rehab team and the more I have come to understand the better I feel about it and am actually excited to get to take him home. (I mean it is great living in a hospital and all :) ) We are excited for Dakota to get to go home and be in a familiar environment without all the beeps and loudness of a hospital.

He is tolerating the amount of therapy very well and the therapists are very pleased at the improvement that they see. Even the doctors have said that they have seen lots of little improvements since he has been here. The doctors really wanted him to be able to stay for the inpatient rehab but the rehab team feels as though this is not the most beneficial time for him at this moment. To be in the rehab program they have to be able to handle three hours of therapy a day (which he has been doing very well) but they also have to be able to participate in some ways. They don't have to be fully competent and everything but they have to be more active then passive. It is also a political thing with insurance as well. Insurance doesn't have to pay for rehab so what they will pay for is only one rehab stay. So...if Dakota does not improve enough in the insurances eyes each week then they will quite paying for his rehab stay. Then Dakota's one shot of really intense rehab is gone. So...in the rehab teams eyes...they don't want to ruin his one shot at this time while his brain is still recovering. They want him to have a little more time to recover so that when he is more ready they can maximize that time. We have come to find out that inoxic brain injury's (which is the fancy way of saying injury to the brain due to lack of oxygen) take a long time to recover from. So...like everything else in our lives we just have to wait and see. It could be a few weeks or it could be a few months before he is ready, or worse case scenario not at all. It is completely unknown and is up to Dakota. (And of course Heavenly Father)

So when we go home he will still receive therapy (outpatient or in home...not sure yet) a few times a week but in reality we will be his biggest therapists. We will be working him like crazy helping him build back the strength in his body and trying to reprogram that brain. Right now there biggest goal is to help him with his muscle tone. His brain is sending messages to his muscles to tighten up so his muscles are so tight. You would not believe how strong this two year old boy really is. Some days I can't even bend his leg it is so tight. They have been giving him medication to help with his tone and just lots of movement.

To help his little feet and ankles they put casts around his feet to help his ankles get back into better position because he wants to point his feet down.

There they are putting them on. It was hard work for them getting his feet to stay in that position. The little casts were so cute but yet so plain...we couldn't have that so....

Uncle Ryan saved the day and definitely spiced them up a bit!

Doing his amazing work! Dakota doesn't even know! :)

The finished product! Buzz and Woody...who else???

So they left those on for a few days and then they took them off and pushed his feet up even more and redid them again. So of course Uncle Ryan had to come back and do his work again...

Ryan and his beautiful assistant Lindsay!

You can't see the full affect from this angle but it is Jessie, Bullseye, Rex and the alien all from Toy Story. I know he is amazing isn't he. Everyone in the hospital has come to admire his work. So if you ever need any artwork done for your kid's room or anything...Ryan is your man. He even painted Dakota this cute picture of Buzz to go in his room.

Thanks Ry for all your hard work and time! I know Dakota loves it!

So, Monday they will take off these casts and are planning on giving him a dose of Botox in his calves and recasting to help the tone even more. Botox...who would of thought. Maybe they will give me a little dose for all of the wrinkles all this stress has been giving me! (That's a joke)

So the physical and occupational therapists started out just coming to the room and stretching him out but they have definitely gotten a lot more intense. They take him down to their gym and do all kinds of crazy stuff with him. The first time they did I was like oh my gosh...they are gonna kill him. (Not really but they are just very aggressive and as the mom it was hard to watch) But I know it is all good for him and even though he cries at moments it helps his little body so much and is helping his little brain to stop sending those bad messages to his muscles. They have to remind me that he isn't crying because it hurts, he just is easily agitated and it is hard work for him. (Lately he has been having those sad emotional moments very often. I can't even count how often. Many times it is when they are doing things he doesn't like, other times he just does it. This is all a good sign although it is hard as his mom to see. It is part of the brain recovery and shows signs that he is definitely more alert. His cries are not his normal cries but rather he breaths really rapidly, with a sad face, some tears, and now starting to hear a little whine. It has been so fun to hear his voice again although it is so short. They only last a few seconds and then he is normally calm again. But he definitely lets you know he is upset.)

Sitting up in his bed...this was only the beginning.

How cute is he though?!

Making him lay on his tummy and work on holding his head up. He does have some head control that the therapists are so happy to see but he does get tired quick and likes to rest it. He is looking at himself in the mirror. His eyes are looking a lot better. They come down more (he used to have them up a lot) and he is starting to have moments where he gazes at us and things. He still doesn't consistently follow things with his eyes but a few times we have got him to follow for a short moment.

They have him starting to interact with things but they do all the work for his arms and hands. They have used these cars, a puzzle, and a ball.

They also help him to stand and feel his body. He has to start all from scratch like a newborn. Our first goal is to get him to have more head and trunk control, being able to hold his head up and trunk up. He will need to learn to hold his weight on all fours, roll over, crawl, and walk.

It is hard to go back from the active little boy he was to all of this, but the comforting thing is there is a chance he can do it all again. They are excited about the improvements that they are seeing and the doctor says it is optimistic to say that he will walk and talk again but they wouldn't say he won't be able to. Although the chances are definitely not in his favor, we will take any chance we can get. His brain is still recovering and he is still improving they just don't know at what point he will stop improving so we will just keep working and mostly just praying for God's help through this all. We know Dakota is trying hard and is working really hard through.

The speech therapist also sees him every day. She works more on the senses and trying to get responses from him. When she first worked with him she did not see any eye gazing but over time she has begun to see his eyes come down and gaze a little bit. She is so cute and calls Dakota her boyfriend and just works so well with him.

Letting him smell some peanut butter.

All the therapists here have been so great and have worked so well with Dakota. Leaving them will be the hardest part because they are seriously so amazing. But we will keep working hard so that he can come back and have that great chance to work with them again.

As you can see from some of the pictures Dakota is completely off the oxygen and is able to wear an artificial nose during the day over his trach to help filter some of the air and give him a little humidification (just like our nose does for our airway). They have switched his feeds to bullis (not sure if I spelled that right at all) feeds during the day which just means he gets fed three times a day for about fifteen minutes (regular meals like us) instead of consistent feeds all day long. Both of these things have been great because it has freed him up and allowed us to hold him easier and now we get to take him on walks in his wheelchair. Too bad it's too freezing outside to take him out but he seems to enjoy getting out of the room and going and exploring other parts of the hospital besides his room.

Getting all geared up and ready to go!

Soakin up some sun from the window.

Family walk.

﻿

Sorry this is always so long but this is my journal so I want to be able to remember all of the details and can hopefully show Dakota when he is older all the progress that he has made, how far he has come, and what a miracle he is. He truly is our little miracle boy and we love him to pieces. I am SO grateful for this chance to be his mom.

And last but not least...our continued thanks to all of you for your prayers, faith, comments, and strength! I know I always say this but we honestly couldn't do this without all of you!!! We hope you all had a very Merry Christmas and hope you all have a VERY happy New Year!!

Wednesday, December 22, 2010

Surprise!!! We are back in Utah as of Monday night. It was a surprise to us as much as it was to all of you. We knew that the insurance had approved the transfer to Primary Children's in Utah but we weren't sure when it would happen. The social worker had initially told us Monday or Tuesday but after talking with the doctor Friday night we didn't think it would be the first of the week. Well, come Monday late morning the social worker tells me the medical jet is getting ready to come down. We were a little surprised and shocked and definitely not prepared for it. We had suitcases at my parent's house we needed to get, Zach had no flight booked (I got to ride on the medical jet with Dakota), it was just a little stressful but we knew this is where the Lord was leading us to. In the beginning when the insurance approved this the social worker admitted it was in God's hand because this rarely happens. When the nurse came in to tell us the jet would be coming she was in disbelief herself and said this never happens on a Monday morning. Zach was able to get a flight and we landed within ten minutes of each other. Everything was just working out perfectly. Our prayers were being answered right before our eyes. We had been praying that we would be able to move forward and be able to be in the best place for Dakota and the answers just came so quickly I didn't even have time to digest them.

It was a really emotional day for me that whole day and the next. It was weird how torn my heart was. Of course I wanted to be closer to home and most importantly I wanted Dakota to have the best care he could but it was, in a weird way, hard to leave this hospital, where we had gotten to know the nurses and doctors there so well. They had an INCREDIBLE picu team there and each and every one of them were so great to us and Dakota. They become our friends over those 3 weeks and even though I knew that they would have great people here at Primary's it was hard to say goodbye to those who knew Dakota so well. The hardest part of it all was saying goodbye to my family. My mom and I had a good bawl session together as we sat holding Dakota's hands, waiting for the medical jet to arrive. I couldn't hold back the tears if I had wanted to.

His last day there...he finally got to wear some real jammies!

Goodbye Nana and Papa...we will miss you!

So comfy and cozy in his nana's arms

Look at both of their eyes...so serious and thoughtful! :)

Dakota did such a great job on the trip...he even took a little nap. It was an interesting little ride that of course I had to document so that he can see what a cool thing he got to do when he gets older. Not every kid gets to have their own personal jet! :)

Lifeflight team getting him all ready to go.

Getting in the ambulance to take us to the airport.

There it is!

Loading him up...so carefully...I was making sure of it! :) They were so cute to him and me. What a great team they have!

Inside the plane.

Since then, I have pulled myself together a little more and the people here have been so amazing and helpful in ways that the PICU there could not. The PICU's job was to get him stable and ready for rehab and they did a great job of that. Here they are specialized in brain injuries and rehab so they have a wealth of knowledge to share. I feel the comfort of the Lord and know that this is where Dakota needs to be. We have already learned so much about his needs and care due to his brain injury that we had no idea about. The medical teams here have been on top of everything since we have arrived and I can't even count the number of people that are involved in his care.

At this point they are not sure if he is ready for their intensive inpatient rehab program yet but they are still evaluating him over probably the next week or so to see where he is at, what he needs, and to prepare us for his care if we end up going home instead of staying in the rehab. So we are still just taking it one day at a time. The rehab team comes in every day to work with him right now and they are SO incredible. We have appreciated their helpful feedback and their extensive knowledge.

There is still no black and white picture of how Dakota will recover and how fast any of it will be. The medical team here is reviewing all of his information and the areas that have been damaged so I'm sure we will get some more info at some point. We have learned though, that with all brain injury's no matter what they are, it is still individual for each child. So, as always, it is in the Lord's hands and it will ultimately be His decision. So we will continue to pray that His healing hand will be over Dakota's little brain and that He will continue to lead and guide us every step of the way.

His new room (only for a day). He stayed one day in this PICU room until they moved him into the neuro trauma center.

We are doing good though and despite this freezing cold weather that welcomed us home, we are glad to be back. We went home last night for a few hours for the first time in a month while Doug and Vicki stayed with Dakota and it was nice to have a home again. It was hard to go into Dakota's room and bathroom and not see his cute little self there with us doing ALL the cute things that he does. There are times like these when the tears just come and we miss him even though he is physically here with us. It is hard to explain the feelings that we have and the emotions that just come. Words cannot express the gratitude that is in our hearts for the miracle our Heavenly Father provided us by keeping Dakota here with us but at the same time, all the memories we have with him are right there and it is hard not to have that same little outgoing boy doing all the fun things he used to do. I am grateful for my Savior and his loving hands that bear us up when we have those hard moments. The hard moments come for a moment and then they go because of His love and sacrifice for us. Although it doesn't really feel like Christmas to us right now because we have no time to think of it, my thoughts are constantly turned to my Savior and my love for him and his life has grown dramatically. So, in a sense we are celebrating Christmas for what it truly is this year.

Please keep Dakota in your prayers...and maybe we will get ourselves our own little Christmas miracle (although we already have). We would love to see all of our friends and family but unfortunately right now with the flu/rsv season they are limiting visitors as much as possible to immediate family. Also, with Dakota's condition they don't want him to get overstimulated while his brain is still recovering and trying to heal. So even if we go home it still may be awhile before we are able to see everyone. Although we would love to see all of our friends and family, our primary focus is on Dakota and his recovery so we will do whatever it takes to give him the best chances for a full recovery. So know we will be thinking of you guys and we continue to appreciate all the love, support, and prayers that you offer in our behalf. We are still fighting and I know Dakota is too.

He has began to show emotion and have moments where he looks like he wants to burst out crying. The first time he did it I was so sad to see him sad but at the same time so happy to see ANY type of expression of emotion come out of him. Since that first time, he has began to do it more often to where he does it several times a day depending on what people are doing to him. They are happy/sad moments for us but it is progress nonetheless. We continue to rejoice with every tiny miracle!

My moment I needed most! He fell asleep in my arms...when I was having one of my hard moments! I LOVED it!!!!

We continue to thank all of you for your prayers for Dakota. I hate to ask any more of you...BUT...there was this precious little 3 year old girl named Fernanda that came into the hospital in AZ a few days before we left with a strain of Meningitis that almost took her life in one day. She was right next door to Dakota and she was going through SO much! She is fighting for her life and a hard recovery from this deadly infection and her family was SO sweet. My heart literally broke the day she came in and I saw her cute mom crying in the waiting room. Everything we went through flooded my mind and heart and I wanted to take this pain away from this family. They were praying for Dakota as we prayed for their little girl...so please if you could pray for Fernanda too!

Saturday, December 18, 2010

Today is our 3 week count and I can't believe it. Three weeks doesn't sound that long but it feels as though it has been forever since that first day, while at the same time I can't believe it has been three weeks already. It is a weird feeling and Zach and I feel as if we have no idea what is going on in the outside world. It's almost like the hospital has it's own little hospital world where time is not measured by hours or days but by changes.

We are getting pretty good at finding decent sleeping positions on the hospital chairs and drowning out all the alarms and beeps. I know where to find most things that we need and how to do most things for Dakota now so it is really like our little home. We do try and venture out each day for a little bit to either sit in the sun (which has been really nice), go to the store or eat, and every once in awhile go take a nap on a real bed. Before Doug and Vicki left last weekend his cute work (Hill Airforce Base) got us a hotel room for a few days near the hospital so we could take turns with them sleeping in a nice bed and showering. It was SO very sweet of them and we appreciated it so much. I just have to thank all the staff out there that work with Doug because they were so understanding with him taking off to be here for two weeks and did so much for us. So thank you all!

Thanks to my sweet parents for coming each day and being with him so we feel comfortable to leave. They have become the best little therapists.

Keeping him moving. He gets really stiff from being in bed and not moving so we have to move his legs, arms, and hands to keep the from getting too stiff. My dad has his own little sayings to help Dakota move. When he does his legs he talks to him about getting on the saddle and his hands by catching and throwing the ball. It is so sweet and he likes to do it for his Papa.

Before I go on with the updates I first have to clear up where we are at because I know it is a little confusing and I have heard some people have misunderstood what I have written. I am so sorry for that. It is REALLY hard to relay everything in a way that is understanding for people who have not actually seen Dakota. So to clarify a little more about his condition...he is actually considered to be in a light coma. When I said he wakes up it means he opens his eyes. He doesn't follow objects with his eyes though and respond to things like a normal person that is awake and alert would do. He is awake for most the day and sleeps most the night. The doctors can't say for sure whether or not he hears us or not but we believe that he can. We have noticed things that tell us he hears us and knows we are there. He does have slight responsees to touch but he doesn't really move much at all. I hope that makes a little more sense to you all.

We are still waiting patiently by his side for any little improvement that we can get. The doctors are really wanting to get him out of here and into neuro rehab to give him a better chance of recovery. So we are in the process of working on this, when and where he will go, etc. Also getting him completely off of the ventilator and breathing on his own will help rehab be more beneficial. They are still weaning him off of the ventilator and so far he has done so well, which is so very exciting. A few days ago they took him off the vent for the first time and just gave him humidified air with a little oxygen. So this means he is taking all the breaths on his own without any help. It is not an overnight process though even though he is doing so well. They have to slowly do it to help build his strength and muscles up since he has been receiving help for so long. But so far so good!

This is the humidified air pump. It helps keep the trach moist and gives him a tiny bit of oxygen. He still needs to be weaned off of the little amount of oxygen that they have been giving him so he is not quite ready for just room air.

The best part about being on this instead of the ventilator is that we got to HOLD HIM for the very first time yesterday!!!! It felt so good and I couldn't believe that I hadn't held my baby (big boy) for three whole weeks! He felt so much bigger already I couldn't believe it.

I hope that he enjoyed it as much as we did and that he could feel our love while he was in our arms.

Today (Friday) he got his trach replaced with the more permaneant one. They had planned to do that Monday but he had a little leak around the first one so they decided to push it up and do it today. It was a quick procedure that wasn't hard on him at all. It looks the same as it did before but he no longer has the sutures (stitches) that was holding it in place. It just has the little band around his neck. It still looks pretty tender around the hole but is healing well. They had me help clean around it the other day and that was hard for me to do. I know it is good for him so it doesn't get infected but it does look painful for him. Good thing he is tougher then his mom. :)

Besides the progress of his breathing on his own (which is a huge blessing from the Lord) there has not been a whole lot of other changes. It is a slow process and each day we look into his eyes we feel he is getting better and fighting so hard. Every tiny movement, every yawn, every blink of his eyes, every breath he takes, even every poop he makes brings us SO much joy. It is hard to be patient as we want so bad for him to just jump out of the bed and run and play with us but we will continue to rejoice in what we have and every tiny improvement that we make until that day comes!

We continue to thank all of you for your encouraging words, your love, prayers, and support! We love and need them all! Thanks for all of the goodies that so many of you have sent. Dakota is getting so spoiled and his little Christmas tree is just surrounded even more by all of the sweet gifts and cards that have been sent. This is by far the best Christmas he will ever have and he doesn't even know it yet! :)

Please continue the prayers and faith! Miracles are happening every day because of them! We love you all so much, even those we don't even physically know that are reading this!

Here are just a few more pics of our precious boy!

The physical therapists sat him up on the bed and he looked so cute like my little boy sitting up like that! I can't wait until he can do it again all by himself!

A big Santa bear stopped by far a visit and brought him a stuffed Christmas bear. It was so sweet.

Holding his favorite blanket. (I put it in his little hands) For those of you who know Dakota he LOVES his blanket. He would normally be sucking on it if he could. He is so sweet...when other kids are sad or crying he tries to share his blanket with them and put it in their mouth. That's what makes him all better so why not everybody else!?

If he could only suck on it now...I'm sure that would make him all better! :)

Saturday, December 11, 2010

Surgery went well and he is looking more and more like his little self each day. It is so fun to see his sweet little face and kiss him all over! I'm sure if he could talk to us he would tell us to lay off but we just can't.

Pre-surgery...cuddling with his BIG Buzz.

On his way down to surgery.

Post surgery-look at that handsome face!!

We are so grateful that all went well with the surgery and he is recovering well from it. Since the tube has been out of his mouth he seems to move his lips and tongue a lot more. I like to think he is trying to talk to me and give us kisses. His trach is still connected to the ventilator since the surgery and they are beginning to wean him off of that to see if he can go completely without the ventilator. We are praying that he will continue to do well. We still continue to wait patiently and rejoice in all the little things that we see. The doctors still can not tell us either way at this point whether there will be any recovery or not. They seem concerned that he has not made more progress then he has at this point but that does not mean there is not a chance. We continue to recognize that it is all in the Lord's hands as it has been from the very beginning. We continue to see tender mercies from the Lord that give us strength and faith that Dakota is fighting hard to recover and the Lord is by His side. Please keep him in your prayers as a few more miracles are needed. We have witnessed so many miracles already that we cannot doubt for second that the few miracles needed are so possible.

He is that little engine that can! (check out his cute little splints...he has to wear them on and off like his boots to keep his hands from curling in)

Zach and I continue to be in awe at the love and support that we have and continue to receive from so many! We feel so blessed to have so many behind us cheering Dakota on. We can honestly say that we have THE BEST friends and family in the whole world. Our lives have been touched by so many through your love and concern, even people we have never met. We cannot express the full amount of gratitude that is in our hearts! So, THANK YOU, THANK YOU, THANK YOU!!!! We could not do this without all of you! Here are a few pics of the tiny amount of love and support that has been given to us. It has all brightened up Dakota's room so much and has made it so much more happier to be in.

His cute room!

Cute poster his aunt Annie made

So many cute cards and pictures made with love just for him

More...

More...Check out the cute poster his Aunt Jenny made of all the things he likes to do.

Beautiful flowers sent by our sweet friends

Our cute friends sent us this adorable Christmas Tree and some presents for us and Dakota. Sad to say we had kind of forgotten that Christmas is coming with all of this going on and it was a sweet reminder and such cute presents! Dakota is sure getting spoiled in all of this!

Thanks EVERYONE!

Besides all of this, the physical support that we have been given from our wonderful parents and siblings has helped us so much. Doug and Vicki (Zach's parents) just left back to Utah today. They flew in the day it happened and have been here: sleeping in the hospital, taking turns on the night shift, running errands for us, making us laugh, supporting us when we cried, giving us hugs and kisses, taking all the pictures, and so much more. They left their jobs and life behind to be here with us when we needed it most and it has meant the world to us. It was sad to see them go but I know that we can't be selfish and keep them cooped up here in the hospital forever. My parents have also been amazing through this all. They sat in the hospital waiting room with us crying that whole first day, they missed my brother's wedding reception that was at their house with all their friends that they had worked so hard to prepare for, they have brought us countless meals, done all our laundry, give us breaks to leave the hospital, have gone to the temple a handful of times, laughed with us, cried with us, and gave us hugs and kisses when we needed it most! We couldn't have made it through this without our AMAZING parents!! We love them so much and are grateful to have them in our life!

Dakota's cute grandma's and our cute moms! Making him move and do his exercises.

Goodbye Doug and Vicki. Thanks for all you have done!

I know I have mentioned before that we have been strengthened beyond our own strength and this strength has made me ponder about how this is possible. We have wondered, how can we feel peace in the midst of tragedy? How can we feel happiness when our son is lying in a hospital bed? How do we not just cry all day at the thought of what has happened? Don't get me wrong...we have shed many tears and we still have moments where we feel the weight of what has happened, but for the most part we honestly are in amazement at the strength, comfort, peace, and joy that we feel. We have pondered a lot about this and have come to understand just a tiny bit more about the atonement of our savior Jesus Christ. He truly suffered for us. He felt the pain and sadness that we have felt and has carried this burden upon His back for us that we are able to have our load lightened during this tough time. It is hard to believe that He would do this for me but I know that He did. He has done it for each one of us because He loves us. What a perfect love He has for us! What a great example to follow! My gratitude and love for my Savior has increased SO much because of this.

Wednesday, December 8, 2010

Buzzmania!!! A friend of our family Debbie Haggard made him that cute blanket, Doug and Vicki got him those sweet pants, and we have three Buzz Light Year Toys for him to hold onto. He is in heaven! :)

I first just have to thank all of you for your sweet comments, love, prayers, and faith! I would love to comment back to each one of you but even though I’m sitting in a hospital 24 hours a day, I just can’t seem to find the time. So please know that we read and love them all. You give us so much strength and encouragement during this hard time.

It is official as of today that they are going to place a trach via a tracheostsomy in Dakota’s throat and a g-tube (can’t remember the official name) in his stomach Friday morning. Some of you are saying what is that???? Well, the tracheotomy tube that will go in his throat is our next step to help him make some more progress. It is a tube that is inserted into the airway in his neck so his breathing bypasses his mouth and allows him to breathe from his neck instead. (I’m sure lots of you have seen them before) He has been on the breathing ventilator since we got here and there is high risk for unnecessary infections and problems if that is in too long. He is able to breathe pretty much on his own now but the problem is that he is not swallowing. Because he is not swallowing, he has a lot of secretions that normally we swallow that he can’t get rid of. This makes it hard to breath and allows the secretions to go down to the lungs which obviously causes problems. So pretty much the only option is to do the trach which will allow him to get the breathing tube out (which has already caused an infection), help him begin breathing on his own, and allow him to get the rehab that he needs. The g-tube will replace the feeding tube that goes through his nose right now, so he will be fed directly into his stomach which will decrease the chance of that tube becoming infected.

I know all of this doesn’t sound like that great of news and believe me as his mom it still sounds very scary to me but it is the only option we have to be able to get him out of the PICU and begin getting him into rehab to help him relearn all those things that he needs to learn again like swallowing, eating walking, talking, etc. The good news is that if he begins swallowing and doing those things on his own again both the tracheotomy and the g-tube can come out. They are not permanent and so we hope they will not have to be in for long. He will have to stay in the PICU for ten days after the surgery so we are still looking at at least two weeks in this hospital. It is hard to imagine that it has only been a week and a half because it feels like forever, so two more weeks was hard to take in at first but we will just take it day by day. The nurses, doctors, and staff here have been great though and have made us feel very comfortable in our “home away from home.” The doctors are hoping that after those two weeks they will be able to transfer him back to Utah to a rehab facility there which will be nice to get back home again. (We will miss this great weather though and of course my amazing family here) We still need to work out all the kinks with insurance and things before it is a go ahead but that is what they are looking at right now.

It is all still really hard to take in and we understand it is going to be a slow process in helping our sweet Dakota get back up and running again, but it feels so good to know that it is possible. We know Dakota has chosen to stay with us as he has fought so hard to be here, so we will just keep fighting for him and staying strong.

My understanding of what faith is has grown so much throughout all of our trials and especially this one. I have truly come to understand and know that true faith is COMPLETE trust in our Heavenly Father, even when you don’t know what lies ahead. It is easy to say that but when you are faced with something like this you are definitely put to the test. It is hard not knowing what lies ahead but I have come to trust in my Heavenly Father that whatever it is we can do it. It has been amazing to feel the love of my Heavenly Father through all of this and the peace and comfort that He has provided me. As my heart has been poured out to my Heavenly Father all day every day for the last week and a half, I have felt his love and know that He is there, He hears me, and He loves me. As I have watched other mothers with their babies come into the PICU and seen their tears, it has opened my eyes. I realize that I’m not the only one that is going through tough times and that all of these other mothers I’m sure are pouring out their hearts to Him as well. But the amazing thing about it is…I know that He hears each and every prayer that I’m saying and not only does He hear it He is there comforting me and giving me strength to keep going…and doing the same for everyone else. I know that He loves each and every one of us and his heart aches even more than ours does for the pain that we are going through.

We were able to go to the temple last night and that was so neat. We have only physically left the hospital a handful of times and although it feels good to get out of that environment, I always get an anxious feeling about being gone too. Today at the temple we both felt so much peace and comfort and we know “all is well.” Like I said before, we don’t know exactly what lies ahead, how long it will be, and even how hard it is going to be, but we know that with the Lord’s help anything is possible and all things will eventually work for our good.

Keep up the prayers and faith please!!! We continue to feel your strength and we know that Dakota does too. He is still the cutest little guy ever and we love him SOOO much!! Keep fighting buddy!

I finally decided it’s time for pics of our little sweetie. So here you go!

Helping the nurse give him a bath.

Does Dakota have the best mom or what? (This caption is from Ashley, not Tessie :))

The ASU music therapy student singing and the occupational therapist working on him. See how dead asleep he is?

When he opened his eyes for Jesus Wants Me for a Sunbeam. So awake!!!

Wearing his new Toy Story cowboy boots that Grandma and Grandpa Rhees sent him. The doctors want him to wear them every couple hours to help his feet stay in good position. I know he is loving it! :)

I'm the wife to a blind man and a mom to a brain injured angel boy! Never imagined either of these in my "story" of life but I have learned to expect the unexpected. My blog is my journal of this crazy adventure called life...the good, the bad, and the ugly. I try my best to live each imperfect day wonderfully! Sometimes I succeed and sometimes I fail!! But I wouldn't trade these trials for the world. They have taught me ALL of the most important things I have EVER learned in life and have made me the person I am today!!